5/10/18 - Eleven Weeks

Mom cried all the way home when she left the hospital today. That isn't out of the ordinary. Usually, after the two hours or so long drive, she gets her composure back. Today was an especially hard day for us...

I got my new tube, you know...I don't know what i think of it. It keeps having to be re-taped. I'm a sweaty baby. Every time it gets re-taped, it hurts my skin on my face. I have sores already. Hoping it doesn't always have to be changed so much. They had too today because they pulled the tube about a cm up, from where it was placed yesterday. I feel more comfortable now, though. I had a lot of changes happen, yesterday. With me, it seems, big changes come with more than I want. Being born was a big change for me and I died, was revived and had to be on ECMO. Coming off ECMO was a big change for me and I ballooned up to 13lbs. (that ment I had about 5lbs of fluid retention); I nearly died again and somehow made it thru and ended up here at CHW. Now, the biggest change I've undergone since that was yesterday's change; my ventilator tube switch from my mouth to my nose. So, when Mom came into the hospital today and there I was visibly drugged up to keep me calm, a new line in my left hand and three nurses surrounding me all gowned up and hovering...the sight of everything made her heart break instantly into a million little pieces. Why? 

It's always a "why" when something sets me back. I didn't do anything to deserve all of this. So, why? Some people say a higher power; some people say there just will never be an answer. She called a nice nurse that was taking over the split shift, while crying on the drive home. The nurse was able to help. She said she'd been working at Children's Hospital of Wisconsin for around nine years; "this" is just how it goes with heart failure patients. I am a very "sick" baby everyone here likes to say. [Man, do we ever HATE that word..."sick". That word makes me mad. It's so ugly and vague. They really only use it for safety of liability at hospitals. That's what my family thinks, anyways. I am, indeed, a "sick" baby though.] The nurse said that she's seen a lot of successful heart transplant patients thru their entire journeys' and that this is just the way it goes. It's a roller coaster ride. Little things that may be normal every day type things for a normal baby, can completely knock me down because of my poor heart function.

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So, today, when I had a fever, it became a situation to be handled with great care. When a baby in my situation gets a fever over about 102*F, they will swab and draw blood to test for infections...part of protocol, I suppose. The fever, they believe is from some sort of blood or lung infection; possible just something in my Art. line, too. They haven't found out just yet. The anesthesiologist that was helping with my ventilator changes stopped in my room and told Mom that they "caught it (the infection) early". They also took my feeds away as a precaution for now...so, no more milk. I'm not on TPN anymore; so sugar water and lipids for a day is all I'll get to have. They take food away whenever something happens with me. It takes a lot of work for my body to process "food" and they'd rather see my body keep the rest of me working well until things are resolved. So, the care team is doing everything to clear up this stuff. They know what to do and have seen things like this a hundred times. It's just hard when it's me, ya' know? I have hard luck; it seems. If luck is even a thing?

So, please keep me in your prayers. Pray that this infection is nothing that this new round of antibiotics can't knock out quickly. Pray that I can remain stable and that they don't need to take too much blood for lab tests, too. When I get a lot of blood drawn for lab tests, it's been our experience that I usually end up having to get another bag of blood soon there after to compensate for what I've lost. Every time I get a bag of blood, that can decrease what hearts (from donors) I can accept because every new bag of blood makes my body become more picky. The pickier my body gets, the harder it can be to find me a perfect heart because my body gets pickier about what heart it will like. So, please also pray that I don't have to get many transfusions of blood while I'm waiting for my new heart gift to come, too. Pray that my family can stay/get stronger thru all of this, too. We are all trying. It's so very hard. 

Thank you for everyone who has prayed for me, donated towards my bills and written to me, lately. Y'all are a blessing in my life and I thank you from the bottom of my heart. My whole family does! The generosity, kindness and love that you all have shown me does not go unnoticed. You're such an important part of my life and helping me get better. Thank you!

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